A couple of weeks ago I held a little tea party for participants and supporters of the Click-East project which has been my main focus (read: all encompassing obsession) for the past 3 years. The party was a way to thank everyone involved, share what we found during the study, and get some ideas from parents about what research we should be doing next. This blog post is to extend that process to those people who weren’t able to come along in person – not easy for parents of young children of course. So if you’re not based in Scotland and a parent of practitioner, this blog post is probably not so relevant for you!
First of all, the simple findings from the Click-East study are summarised in this September newsletter, the final one from the project. I have a little update on this as well – we have found in our most recent look at the numbers that there is evidence that more children in the ‘intervention’ group made reliable improvements than in the ‘waitlist’ group – eleven compared to six. In other words, while the app didn’t have big positive benefits for everyone who played it, there might be a sub-group of children who DID get something useful from playing. The problem is, we can’t work out what these children have in common – if anything. The nicest thing would be to be able to say “the app is great for children under the age of 3″ or “the app has benefits for children who have particular problems with skill X” but so far we can’t see a pattern. I’m still looking and I’ll update you if I find anything!
The next thing I wanted to do here was to begin to address some of the concerns raised during the tea party. I asked parents to write on post-it notes what were the big issues for them. In addition, there were star stickers so that parents could endorse each others’ suggestions. The process (derived from Beltane delivered training!) worked really well and I feel I have a lot of useful info to work from.
So here are a couple of the big issues that were raised – either by lots of parents, or which got lots of stars – and some (hopefully) useful information to go with them.
Toilet training (and parent training!)
For example: “What is the best way to tackle toilet training? Any hints and tips would be great” and “Toilet training – how to do this with no language skills”.
The National Autistic Society runs seminars on this all over the UK. The next Scottish one is on the 5th November in Falkirk. As you know, apps are my thing so I’ll also suggest you have a look at this app called Once Upon a Potty. This can basically be thought of a “social story” (see below) for using a potty and is well worth a look. Another story for potty training, sent to me by a blog subscriber (with thanks) is this amazing tale, created by a clinical psychology student, called Poo Goes to Pooland.
Other NAS seminars are relevant to some of the other issues raised by parents at the party – such as “periods of change in my daughter’s routine, e.g . the summer holidays, are reflected by lots of tantrums and anxiety” and “how to deal with scratching and physical aggression” and finally “my son can be very stubborn if he doesn’t want to do something and it is difficult to solve the situation”. For some of these difficulties, you might like to check out the seminars on Understanding Behaviour or Managing Anger. There is a directory of these sorts of opportunities on the NAS website and another good resource for families in Scotland is to sign up to the Scottish Autism Network newsletter which is packed with useful information.
Another strategy, mentioned above, which might help with a lot of these issues is the use of social stories. There are detailed guidelines for designing and using social stories but in essence the principle is that a story is created – on paper, on a computer, in an app – which pictorially represents a scenario. The goal of the social story is to allow the child to rehearse a situation in order to be prepared and more skilled when the real thing happens. Social stories are used to introduce new experiences – such as starting at a new school or going to the dentist – and also to help children with regular activities – such as getting dressed or crossing the road. There are various social story apps to allow you to create social stories for everyday routines – e.g. Choiceworks and StoryMaker – or for sharing a single social story for a specific concept like emotional regulation. But all you need really is some paper and pens.
General knowledge & skill development
Another topic raised by a couple of parents, and receiving lots of stars, was the need to “teach autistic children other skills apart from personal independence” for example, general knowledge, music, swimming and sports. I think I am right in saying that parents weren’t looking for therapies, but just for opportunities to learn, perhaps in a context where their child’s needs would be understood and accepted. This is tricky – parents are right to say that there is an absence of support in this area. I would suggest having a look at the services provided by Capability Scotland, for example their Westerlea Early Years service in Edinburgh holds music, play, sensory and swimming sessions. In terms of general knowledge though, I am afraid I’m turning up a blank. I’ll get back to you if I find anything relevant.
In a subsequent blog post, I will share another batch of post-it based comments from parents about what they felt were research priorities for the future, and point readers towards current research on these topics. I hope it will be reassuring to see how much the concerns of parents DO in fact overlap with the work being done by academics. In the meantime, thanks for reading and do email me if you have any suggestions to add to what I’ve included here.